Defining Depression in People with Myositis

Adapted from a presentation to the Myositis Support Group at Hospital for Special Surgery

Suzan Fischbein, LMSW
Program Coordinator
Myositis Support Group
Hospital for Special Surgery

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It is common to speak of “feeling down” or depressed when dealing with chronic illness. Everyone has bad days and may feel sad on occasion, but true depression is different:

Depression is marked by:

A continued period of two weeks or more of feeling sad, crying – often without an obvious cause.

Anxiety.

Feeling hopeless.

A depressed mood or loss of interest in activities that were once pleasurable.

It is understandable, but not inevitable, that people with chronic illness may be at a 15 to 20% increased risk for depression.

Factors in Myositis that May Increase Risk for Depression

It is rare disease; those diagnosed have probably never heard of it before.

Close friends and family have also probably have not heard of myositis.

Many doctors and healthcare providers are unfamiliar with the disease, and it can be frustrating to feel that you may know more about your illness than your treating providers.

It is considered an “invisible” illness; it is common for others to make comments such as, “You don’t look sick,” while you are feeling weak and tired.

People with myositis can experience difficulty in completing tasks of daily living: grooming, bathing, dressing, and meal preparation. This can increase feelings of dependence and helplessness.

Myositis often leads to decreased muscle strength. People with inclusion body myositis (IBM), in particular, are at increased risk of falling. This can come without warning, making it difficult to anticipate and be prepared. Decreased upper body strength makes getting up from a fall especially challenging.

Swallowing difficulties may occur, which may make mealtime challenging. Adjustments to diet may need to be made. This can mean that you are unable to eat some of the foods that you love, which is another loss.

The physical activities that were once enjoyed, such as hiking, water sports, skiing, and gardening may no longer be possible or need to be modified.

Side effects of medication: prednisone, for example, can lead to depression, anxiety, and mood changes.

Caregivers may feel frustrated, tired and angry, which can further affect people with myositis.

Unpredictability of illness makes planning difficult. This can have a great impact on work, retirement and travel plans. People may feel “robbed” of being able to live their lives as they had once planned or imagined.

Treatment Options

Feelings of sadness and depression can further limit the adaptations that have already been made in living with myositis. When depression significantly interferes with your functioning, you may want to consider seeking help. There are things that you can try on your own or can be combined with seeking professional/spiritual help.

Things That You Can Do Yourself

Find ways to enjoy foods while maintaining a diet that is tailored to your specific needs.

Follow a sleep pattern that works best for you can help to increase energy.

Pace yourself so that you don’t feel unable to do anything after you’ve done “too much.”

With the guidance of your doctor, exercise and keep moving.

Find providers who understand myositis and how it may be affecting you.

Stay connected with your support systems: in person, by phone or online.

Educate those around you so that they can be informed about the challenges of living with myositis, especially since your symptoms may not be obvious to others.

Understand that your myositis has affected your loved ones. Roles and relationships have changed. Allow them to express their feelings, and how this has changed their lives. Their reactions may not be the same as yours. For example, they may not be able to meet your expectations of them. It can be difficult but, by keeping honest communication going, everyone concerned may be in better positions to understand each other and offer support.

Because myositis can be unpredictable, anticipate and prepare yourself and others for circumstances that may arise.

Give to others through volunteering or outreach, which can enhance your own feelings of well-being.

When Outside Help Is Needed

If you feel comfortable, friends and family can be a source for referrals. However, depending on cultural norms and family beliefs and values, there may be a stigma associated with seeking professional or spiritual help for issues related to mental health. In seeking outside assistance, try to find someone who is sensitive to this.

Find a support group. Though not for everyone, our group members often say that the HSS Myositis Support Group is “the only place where they can go where they feel that everyone in the room gets it.”

The Myositis Association (TMA) can help you find a support group in your area.
Consider individual talk therapy (also known as psychotherapy) or cognitive behavior therapy (CBT) with a licensed social worker, psychologist, or psychiatrist who understand issues related to chronic illness.

Learn mindfulness techniques. This focuses on the mind-body connection through the use of breathing, guided imagery, meditation, yoga, and some elements of CBT to help reduce stress and lessen negative thoughts.

Sometimes, medications such as antidepressants may be needed and can be helpful. Your doctor may refer you to a psychiatrist for an evaluation.

The combination of talk therapy and medication can also be useful.

Where to Get Help

Consider effective ways to communicate with your doctors. You may see several doctors, but they may not be aware of how you are feeling emotionally.

Keep a record of what has been concerning you emotionally.You may feel fine on the day of your visit, but this may not tell the whole story.

Effective communication includes your entire healthcare team. By telling your nurse, physical therapist, or social worker how you are feeling, they are in a better position to address your needs and help you find resources.

Psychotherapists

Medical Insurance Providers

To find a psychotherapist or psychiatrist in your insurance plan, contact them directly.

Learn more about the HSS Myositis Support Group, a free support and education group, held monthly for people with myositis and their families and friends.

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